All your fibromyalgia experiences, questions and answers.

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Postby Wackers34 » Thu Dec 19, 2013 11:43 am

I was just wondering if anyone thinks they could be mis diagnosed sometimes? Fibro symptoms run along so many other illnesses, I get so overwhelmed by it, just thinking about it. CFS, Lyme, Anxiety, Depression, RA to name a few can all create similar symptoms, and I guess many people can have multiple illnesses.
I am going to see a rheumy soon to be diagnosed by a consultant, as only diagnosed by GP...I guess then I might know more
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Re: Misdiagnosed?

Postby helen.whittaker.125 » Thu Dec 19, 2013 12:02 pm

I have had depression on and off since I was 8 also been tested for so many things over the last 12 years which all showed up clear, but the test for fibro I scored 16 out of 18 because the dr wasn't sure if my knee pain is from ostiocondritus or fibro. Most of us I think have other under lying illnesses or disorders x

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Re: Misdiagnosed?

Postby whoami » Thu Dec 19, 2013 12:37 pm

One of the reasons it takes such a long time to get a diagnosis for fibromyalgia is ruling out other illnesses.

All the blood tests, xrays, scans are not to say, look there it is fibro. They are to determine the presence of illness with similar symptoms.

The trigger/tender point test seems to be one that determines fibro. You need to have 11 out of the 18 present.

There now is a blood test that confirms fibro. It is not wildly available and is very expensive. I am not sure where it is approved for use.

If you are concerned you may have another disorder, talk to your Dr and ask him if he has ruled out other illnesses

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Re: Misdiagnosed?

Postby painprincess1 » Thu Dec 19, 2013 1:22 pm

I would bet 1000 pound everyone with fibro has had the same thought.i said as much to my dr and he told me that I did not prosent anything other then fibro,yes we did all the blood tests first but he asked why I wanted to see a rumey he said why he won't find nothing I didn't so sure was he I had it, anyway I did go and within five minute flat he said ahhh yes u have fibro,my dr give me that smug look when I went in next lol, the only thing u can do is get to no your body and then u do learn when it's fibro or if it's something more, but it's very ture I offen put everything down to fibro myself .
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Re: Misdiagnosed?

Postby jom2774 » Thu Dec 19, 2013 3:19 pm

It looks like I am one such case. I was diagnosed as having myofasical pain and then went on to have other symptoms. The rheumy first diagnosed fibro about 16 months ago. I had 8 pots of blood taken and it showed that I had sticky blood. They were reluctant to diagnose Hughes Syndrome (similar symptoms) as I did not have multiple miscarriages even though I said I had only had one pregnancy.
In April I was hospitalised with full water retention and when during a phone call to my rheumy I told him and he sent off for another mri and appointment. This time I was armed with some family history. He checked bloods again, this time 12 pots.
I have now been diagnosed as having raynauds and I need one more round of blood tests but they are 90% sure I have Lupus SLE. Having received all the information about Lupus from childhood through to my sensitivity of sitting in the sun, everything fits.
All the symptoms of fibro do mix with other conditions but it is one of those that may or may not have indicators for other conditions. They are all equally as debilitating in living day to day lives.
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Re: Misdiagnosed?

Postby FluppyPuffy » Thu Dec 19, 2013 9:37 pm

Thinking that you may have been mis~dx'd is part of the process, and is something that pretty much all of us have wondered about somewhere along the way. It doesn't help that with the symptoms we experience suggesting so many other conditions as well. And because we often spend time looking online for answers to questions about FM, what it could mean for us long term etc, we come across references and mentions of the other conditions that can also present similar symptoms to FM, all of which can add a bit more fuel to that rapidly growing mis~dx idea.
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Re: Misdiagnosed?

Postby zappa20 » Fri Dec 20, 2013 5:05 am

Wackers34 wrote: I am going to see a rheumy soon to be diagnosed by a consultant, as only diagnosed by GP...I guess then I might know more

Hopefully seeing a Rheumatologist will put your mind at ease one way or the other. But if he confirms your GP's diagnosis of Fibro, will you be abe to accept this? The reason I'm asking, is because the process of managing and improving life with Fibro ,is acceptance that there's no undiagnosed alternative reason causing your symptoms. After they've ruled out all the 'usual suspects' that is.

As well as concentrating on finding which things improve your daily individual symptoms or make them worse. Continuous lack of quality sleep and stress as an example generally tends to make everyones fibro symptoms considerably worse. Other things like warm baths, relaxation, pain management techniques , streching exercises, pacing so as not to overdo things in a good moment, tend to help. It's trial and error to find what works best for you over time to live the best quality life you can. .
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